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Pegleg84

Fibromyalgia and IBS symptoms

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Hi guys,

I've been dealing with a couple "mystery" problems lately, which have been on and off the past 3 years or so. I've been gluten-free for almost 8 years now, and haven't been eating dairy or soy for at least 4 years.

Mystery pain #1 - severe pain in my lower left side, before/during/somtimes after a BM, which tends to be the big C. This summer I started seriously looking into the possibility that I might have IBS in addition to Celiac. Had a colonoscopy to rule anything else out, and it was clean, so my GI says: probably have IBS? I'm not convinced, but it's quite possible.

Mystery pain #2 - all-over body aches/tingling/pain, usually starts in my hands and quickly spreads to my entire body. It can last for a few hours to a few days. I'm currently having a bout of this right now. Arms feel all sore and burning, keep having weird twitches in my arms and back. It started this morning (didn't sleep well last night) and has gotten progressively worse. About ready to go home and crawl into bed with some painkillers.

Anyway, I've been doing my research and found that Mystery pain #2 sounds an awful lot like Fibromyalgia. When I first started feeling it, I chalked it up to getting glutened, but it normally happens several days to even weeks after a known exposure. I thought it might be peripheral neuropathy of some sort (common with Celiac), but while I get tingly/painful hands and feet, it's not a constant numbness. I also learned that IBS and fibromyalgia often show up together, though if I have one or the other or both, not sure which causes which.

This is the first real flare-up in several months. Back in the summer, I had a seriously horrible bout of pain that went on for over 2 days, and spurred me to go to the clinic. My bloodwork was all normal except low iron and B12 (which is normal for me. I've been supplementing and the last test was much better). I also had bad constipation and the pain went away as soon as it finally got through me. I haven't pursued a diagnosis or anything, figuring that body pain was another symptom of the potential IBS. However, I haven't had any real IBS symptoms in a couple months (yay!)

I'm currently trying to figure out if there are any food triggers for either of these mystery pains. Last month, I cut out nightshades, and didn't have any incidents. I've reintroduced potatoes (been eating a fair amount of them lately) and peppers (chili powder and sauces). Haven't noticed a huge difference reintroducing them, until today at least. Will drop them again for a while and see if it improves?

Anyway, does anyone here have IBS and/or fibromyalgia, on top of the fun of Celiac Disease? Any information or advice?
(I checked out an IBS forum, but found it pretty uninviting and useless compared to here)

Now to try to get a bit more work done through the fog and tingly fingers before I collapse.

Thanks!
Peg

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Hello, Peg :)

 

I too have Fibromyalgia, IBS, and Celiac Disease. Although, I was diagnosed with IBS prior to Celiac, and assume I may not have had IBS after all.

If you continue having pain, I'd definitely see a Rheumatologist to see if you do have Fibro. I'm currently taking Savella and Gabapentin for management of my Fibro and my flares rarely happen any more. At one point, my fibro was so bad I had to walk with a cane (years ago) and I had been on pain killers, muscle relaxants, etc. to no avail. Plus, being gluten free really does help the fibro I have found. I also use a great fibromyalgia/arthritis essential oil lotion when needed called "Two Old Goats" -- works fantastic, believe it or not! I order mine off amazon.

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Hi Pegleg

My gastroenterologist told me (after all sorts of tests came back normal) that I might have IBS - I had the exact same Mystery Pain # 1 that you cite above.  I could understand having pain before a BM but mine really majored after one - sorry, TMI - and it could continue for hours sometimes and the pain seemed also to affect my hip/sacroiliac area.  Also a feeling of bloating - without being able to pass wind, sorry - more tmi!  He told me to go lactofree - didn't help at all.  When I went completely dairy free for a few weeks I had relief.  I couldn't believe it as the pain had been so bad at times - I thought it had to be something far worse.

My mother has osteoporosis so I have gone back to dairy - hard cheese predominantly - and the odd latte!  Then I get that pressure/pain building up when I overdo the dairy so then just cut back. It seems to work. I know there are other foodstuffs that contain calcium like tinned sardines, which I eat, but I would miss my dairy!  (One thing I really try not to eat is fat probiotic yoghurt - oooh, just thinking about it makes my hip hurt!)

What I can also tell you is that since DX with celiac disease three years ago if I wear tight skirts/elastic waistbands/tights etc any pain and bloating that I have is magnified tenfold.  The wrong outfit combo really takes its toll!

I realise you may not eat dairy - so perhaps for you there is another trigger?  Are you still eating oats, perhaps?  For me dairy was the trigger, but I am sure one can get these cramps/bloating with other foodstuffs.

As regards Mystery #2 tingling - that's me, although I have to say I don't have the bodywide pain you describe - but I have had pain, a sort of painful itch/soreness deep in my ribs and sacroiliact joints.  The tingling comes and goes and I think trace amounts of gluten from somewhere are possibly to blame - my recent outbreaks have been when I have eaten out.  What amazes me is how long the tingles last - weeks.  I also get facial tingles and twitches, on occasion bee-sting pains in my cheek.  A few months ago someone was on the forum and I have become such a hypochondriac/Dr Googler I was conversant with the effects of too much B6 and suggested their tingles may be caused by that. Lo and behold the poster came back after some tests and said that was exactly what they had!!  I have never had my B6 tested but might do so in the New Year.

If  you do get any answers please let us know.  And BTW - how is your thyroid? 

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Hi Peg,

Aren't mystery symptoms fun?  Not! ?

I just want to say that I've had the left sided pain as well.  Mine, like Cristiana's, will sometimes continue after a BM.  I think this happens when I get constipated.  And then something will happen causing it to all come out and then there's pain that continues after.  I hope that's not TMI.  I have found that cutting back on dairy helps a lot.  As much as I love it, it doesn't seem to love me.  I'm actually struggling to get enough calcium.

I do have peripheral neuropathy that has been helped immensely with magnesium supplementation.  I don't know if that would help you or not.  What I have is tingling and sometimes pain in my hands and feet.  My Dr recommended 200-400mg of chelated magnesium daily.  I found a good spot for me is 300mg and it has been reduced by at least 75%.  I'm so thankful as I couldn't even sit and read because the tingling was driving me crazy.

Finally, as Cristiana mentioned, has your thyroid been checked?  Thyroid issues can mess with everything!

I hope you start feeling better...(((hugs)))

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Thanks guys,

I seem to be back to "normal" today, (after a lovely emotional meltdown first thing yesterday. Yet another fun symptom). I have been kinda constipated, so that might be affecting things (the last time I had really bad fibro-like symptoms was during 3 days of constipation. Went away when I was finally able to do my business.)

Anyway, I have my thyroid checked about once a year (can't remember if my last bloodwork checked it or not), but it's always been normal (my mom has thyroid issues, so I always check). My iron and B12 tends to be low, so I supplement. I might try the magnesium, thanks. I also supplement calcium (when I remember), since I can't handle dairy (every so often I'll have a teeny bit of cheese and handle the consequences the next day)

A suspected trigger for this (especially the fibro pain) is nightshades. Last month I cut them out completely, and while I wouldn't say I felt profoundly better, I didn't have any achy days our bouts of IBS symptoms. I've introduced them back and have eaten a lot of potatoes in the past couple weeks, so I could be feeling the effects of that now. Going to drop potatoes for a couple weeks (until xmas) and see if that has an effect.

In any case, the next time it hits be bad, I'll talk to my doctor about whether it could be fibro, and if I should see a rheumatologist. Getting some drugs to handle the pain when it does happen would be great. Same with the IBS pain (which has actually been pretty good lately. Nothing serious in a few months). It's still frustrating not to know what's causing what, though: is it all Celiac doing stupid things? Do I have IBS and Fibromyalgia or is one causing the other? Also considering some drugs for the anxiety attacks when they happen (I've avoided this until now, but if its due to an imbalance triggered by other things, then drugs might not be a horrible idea)

Anyway, thanks for the advice/support.
Man, if I only had to deal with being gluten free without any of this other mess, I'd be incredibly grateful.

 

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Many gluten-sensitive people are also lactose intolerant. I use a gluten-free dairy ease when I consume any dairy, which helps significantly. I also found that taking a gluten-free probiotic in the am helps. Your B12 level should improve as your system heals from the gluten-induced inflamation.  Now that I think about it, I seemed to have fibromyalgia-like pain until I went gluten free.

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I have lots of pain... all over... and it moves around.  I've been diagnosed with chronic fatigue syndrome, fibromyalgia... and some others I can't remember!  Pain is caused by inflammation... always.  We have to decrease the inflammation in order to reduce the pain.  I took Ibuprofen several times a day for decades... plus some prescription meds off and on.  After reading what that did to my overall system, I stopped and went with a high quality Turmeric (with peperine) supplement, vit D and plenty of Omega 3.  It helped.  My husband's pain has been reduced significantly recently when we cut out the carbs and he has now quit the prescription NSAIDs.  Carbs fuel inflammation.  I had some decrease in pain when I went gluten-free 3yrs ago and then we eliminated soy& dairy, and a little more relief now when we eliminated most carbs.  My system has a lot of detoxing to do, I know from genetic testing, so my results are not as rapid or dramatic as his are.  I am now eating foods based on how they will heal me and to minimize further damage.  Magnesium is also helpful for leg cramps and constipation ... of which I tend toward... I teeter on the edge of it routinely and have that pain in my gut you mention, most of the time.  My belly bloat definitely went down shortly after cutting out the carbs.  I must have been holding a LOT of inflammation in my intestines.  I know I will continue to heal and intend on altering my diet until I reach a homeostasis.  I'm not giving up because I don't get results in a month... or 6 months.  I intend to spend my retirement feeling better and not taking multiple medications with multiple side effects.  Putting a bandaid over that inflammation isn't really the answer.  You have to dig down and find the cause.  Dairy is inflammatory, whether you actually  FEEL  the effects or not and most people just do better without it.  We all know people that can eat junk food all day, stay thin and seem to be in good health.  They are the exception!  It's not that there isn't damage going on in them, they just don't feel the pain we do, but they may end up with cancer as a result of the damage.  We have to be really good detectives to get to the bottom of all this.  Doing an AIP protocol really got us on track and realized that the things we were eating were causing us problems... does anyone need 100 quarts of tomato juice!!  LOL... yep, we don't tolerate nightshades!  I can raise more beans and lettuce next year without room for 25 tomato plants!  My husband was shocked when he challenged himself on it and found out it was a problem.  He drank it EVERY  morning for years!  He swore he wasn't giving it up... until he had some interesting reactions.  Sometimes we have to eliminate a few things to peel away some layers and get to the root of more problems.  It's worth it though, when you start to feel better and feel in control of your life again! 

Blessings and Good Health to all in the New Year!

Debbie

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On 12/13/2016 at 10:07 PM, deb_rn said:

I'm not giving up because I don't get results in a month... or 6 months.  I intend to spend my retirement feeling better and not taking multiple medications with multiple side effects. 

I think I need to put this on the wall in my kitchen.   This is great advice.  I had hoped that I'd get better really fast - but it has happened very slowly, with a few setbacks.  I will try to take the longer view from now on. 

Thanks!

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Hi guys,

Reviving this thread, because in the past month my "mystery" fibro-like pain has ramped up big time. 3 weeks ago the pain was so bad I though I'd pass out (went to the clinic, more blood tests, everything looked fine), and since then have had more painful days than not. Pretty much every day since last Monday. This Monday it started as soon as I woke up and couldn't even get to work. Today my legs and arms are achy/burny. Last night I felt fine for about 4 hours (and did all the things while I could!).

Anyway, today I saw my doctor, and although we need to rule out other possibilities (arthritis, neuropathy, etc), she also thinks it could be Fibro. Funny thing is, it was the fibro pain that drove me to get my IBS syptoms checked out, and now that is a lot better. Almost like my digestive pain is showing up everywhere but my gut. So weird.

Side note: definitely not gluten related. I haven't eaten a thing not cooked by me or not at a gluten-free restaurant in a while (eaten out of the house maybe 3x in the past month). I'm taking all my vitamins this winter (and my energy levels are actually quite good, B12 is up, haven't gotten a cold/flu, haven't had winter depression), so the fact that I have all this pain now seems extra strange. We just got a new mattress so I've been sleeping pretty well (I need a new pillow too, but OMG it's so much better!)

So, I see the rheumatologist in 6 weeks (he's on vacation, then I'm on vacation, great timing). Any advice for coping in the meantime? My dr offered to prescribe an antidepressant as pain-relief, but I think I'd be better to wait and see what the RA thinks. I'm going to start taking tumeric supplements, get back on the probiotics, and try to get back to a meditation and stretching (tai-chi) routine.  We;re going on vacation in a month, so if I can get this semi under control before then, I'll be ready to start medication after if necessary.

Debbie, thank you for your encouragement. I also want to be enjoying my future, not dreading years of pain and drugs. I want to get this diagnosed and under control now so I can adjust and get on with my life! Also, a reminder to get my garden started.

Thanks again, everyone.
Gawd, if only gluten were my only problem...

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Hi Peg...I'm sorry that you're experiencing so much pain...that's terrible.  ((((Hugs))))

I would suggest taking magnesium daily.  I take mine before bed each night, 300 mg.  It has helped so much with my peripheral neuropathy.  I also find Epsom salt baths to be very soothing when I have pain.  Do whatever you can to relax and take care of yourself.  

You could try eating AIP for a while to see if reducing inflammation overall helps with these symptoms.  

I'd also suggest making sure that you're thyroid isn't just normal, but optimal.  That would be a TSH close to 1 and free T3 and Free T4 around 50-75% of the range.  Many Dr's will say you're fine with a TSH of say 4.4 with the range being .5-4.5...but I feel horrendous at that level. 

Just thoughts.  Thank you for updating us.  I hope you get some relief!

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Hi, pegleg. Sorry to hear you're not feeling well.  

How is your vitamin D level?  There's a connection between low vitamin D and fibromyalgia, chronic pain and other autoimmune diseases.

https://www.ncbi.nlm.nih.gov/pubmed/18499714

This study says vitamin D "was lower in inflammatory arthritis and chronic pain/fibromyalgia than in other groups" of rheumatology patients.  

Our stores of vitamin D get diminished during the winter months.  Perhaps some extra supplementation would help.  Hope it's as simple as that.  And hope you feel better soon.

 

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Thanks, guys

Current status: not too bad. Legs are working. Arms a bit achy. Weird mild headache. I'm trying not to over analyze/fixate on the pains, since that tends to make it worse.

I've been supplementing Magnesium, calcium, vitamin D & B12 every day for the past couple months. Iron every other day or so. I've seen a huge difference in my health this winter (other than this stupid pain) No colds/flu, my mood is good despite stupid things happening, energy is good despite the pain. I could maybe increase my D&B12, see if it makes a difference. Certainly hope they aren't causing problems instead.

I get my thyroid checked at least once a year. so far it's fine, but that's a good point. I might be able to look back at my records and see what the thyroid counts are.

I have also been kinda gassy lately. Eating a lot of root veggies. Don't know if that would be causing/adding to my problems or not.
(I also pulled a muscle in the side of my tongue or something stupid like that, so I have legit pain on the side of my face! UUG! Hard to rest that muscle unless you never want to eat or talk or anything)

Oh, and I've also been avoiding nightshades. Still eat some potatoes, but have cut waaaaaaaaay back on the chili pepper. Seems to have helped my IBS symptoms a lot at least.

What is this AIP diet I keep hearing about anyway?

 

 

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1 hour ago, GFinDC said:

Hi Pegleg,

I think the AIP diet they mentioned is the Auto-immune Protocol diet.

Just looked it up..... oy.
Really not looking to put myself on an even more restrictive diet right now, but might try it out at some point (I'm already going pretty easy on most things on the "no" list). At least it's a temporary diet, and I have heard good things about it.

I have started taking tumeric (curcumin) supplements. Will probably be a while before I might notice any difference. Maybe it'll help inflammation (in my gut, other inflammatory pain) but not the fibro pain since it's not actually inflammation. I figured it was worth a shot.

Current status: leg pain, but not too stiff. Will see how I do over the weekend (last weekend was not so bad). I'm on my way to hitting the "3 weeks of pain" needed to diagnose. Also, have never had this pain every day for this long. Trying to take it in stride (freaking out makes it a million times worse)

Thanks again, guys!
 

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AIP can be permanent... or a form of it.  It just depends on what you are sensitive to.  We eat limited eggs & peppers(paprika,cayenne, chilis), no tomatoes, potatoes, dairy, corn, soy, sugar, beans(legumes), rice, starchy flours... and probably a few more I can't think of right now.  Sometimes you learn what the threshold is and then limit the amount and frequency.  The supplements to support your physiochemical pathways are just as important!  It just becomes a way of life.  When you feel better, you don't see it as a curse, but rather a blessing to know how to feel better!  

Debbie

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I live off of ginger. Grated, capsulated, juiced, pickled. It's the one thing guaranteed to help my nausea. Not so sure if it helps other pains though.

I got some tumeric capsules (curcumin), but haven't been diligent in taking them, so who knows if that will make a difference or not. I've also been truing to do stretches at least twice a day. that seems to help with the stiffness, at least.

Problem is that fibro has more to do with processing pain rather than inflamation, though I have plenty of that too. I've probably been more stressed than I thought lately (work is busy, pain is stressful), cause I've developed a massive canker sore under my tongue! Hard to talk and eat and yawn. So painful!  Currently dealing with that, and tightness/pain in the side of my neck which is giving me a headache, along with the usual tingling/burning arms. Had a bad knot in the back of my leg on the weekend. Oy, it's been rough. I managed to get out of the house for a few hours on Saturday, at least.

I'm currently debating whether to rush back to my dr. and get on the medication she recommended (Cymbalta or Savella, can't remember which). I'm hesitant because it's an SNRI antidepressant, and I'm worried about side effects. We leave on vacation in less than a month, and as much as I would like to not be in pain, I also don't want to be dealing with a bunch of weird side effects. It's hard enough traveling with Celiac. I see the rheumatologist right after I get back. Opinions? Should I get started now and see if it makes a difference?

I wish I could just change my diet and magically solve my problem, but I don't think that's going to work in this case. I have cut back on grains lately, though still eating some rice and corn (for me, the more processed. I can handle rice noodles but not the grains, for example). I should cut out all the nightshades again (have been eating potatoes). Anything I can do to help, but I don't expect it to be a silver bullet.

Thanks again for all your support in this. I've been worrying about it a lot. The pain sucks now, but the thought of spending my future in pain is even worse.

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Might try dropping all grains, they do cause inflammation, and water retention. I find nightshades like tomatoes, peppers, etc. to the opposite for me but we are all different. I might suggest a enzyme complex, and BCAA, along with vitamin C. I have a customer with Fibo who lives on a paleo/keto diet and swears by enzymes, I do not recall which ones she takes. Try Liquid Health Stress and Energy complex and perhaps a magnesium/calcium complex for the anxiety/stress issues. Should help alleviate some of it.

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Feeling relatively better today because I had a moment yesterday where I just told myself: Stop freaking out!! I was getting super stressed and amplifying the (currently relatively minor) pain I have. Stop worrying. Stop focusing on it. Ta daaah! Sometimes that meditation and CBT training does come in handy. I know the pain is still there, but I'm not giving it a megaphone.

Anyway, going to focus on mental clarity and keeping my diet decent for now. Am seriously cutting back on grains (weaning myself off, I guess). As I've said, my vitamin levels are great right now. Trying to be more diligent in taking my enzymes and probiotics. Spending more time stretching and meditating (if not actually on the cushion) and doing the stuff I need to do. 

In any case, I think I've got myself leveled out for the moment. You guys always make me remember that the best remedy is often diet and attitude. Doesn't mean I won't end up on drugs at some point, but I have to be able to do as much as I can on my own instead of just giving up.

Will report back after I see the specialist. This isn't over yet.

 

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You should check out the KETO way of life.  It reversed all my husband's IBS & GERD symptoms.  He says he's healthier at 72 than he was at 19!  He can't imagine anything that would cause him to "cheat" and make him feel miserable for many days!  We have no cheat foods in the house anyway.  My inflammation is definitely reduced, but not done with the pain yet!

Debbie

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Reviving this thread again with another update: I've been diagnosed with Fibromyalgia.

I saw the rheumatologist a couple weeks ago and my GP this morning. I started on Cymbalta about a month ago and it appears to be helping somewhat. It's been rough though, pain coming and going, trouble sleeping and tired during the day, crazy muscle twitches and restless leg. Right now I just don't exactly know what I'm supposed to do or not do. It's not as simple as figuring out what not to eat (though there's that too). But, just like Celiac, I'll get a handle on it eventually. I can't get rid of it, but I can get to the point where it doesn't control my life (so I am trying to tell myself right now.)

I'm thinking that Celiacs developing Fibro must happen to a good percentage of us. I have two friends with Celiac who were recently diagnosed with Fibro as well. (one of my friends and I swear we're twins or something). I'm not saying that Fibro is caused by Celiac, but it is often triggered by illness or trauma. Looking back I think I started having Fibro/IBS symtoms after a very bad glutening about 4 years ago. Maybe it's been longer. Who knows.

In any case, right now I feel ok and that is nice. I haven't had much trouble with IBS symptoms lately (I seriously cut back on nightshades, especially chili pepper, and that seems to have made a big difference) but so far can't pinpoint a food that triggers or helps alleviate my Fibro symptoms, though I have noticed eating less grains may be helping.

It's going to be a long slog, but glad I have all of you in my corner.

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Have you been tested for SIBO?  Small Intestine Bacterial Overgrowth. Very common in folks with celiac disease, may be what most IBS patients actually suffer from. Associated with everything you have mentioned. My daughter's GI doc at University of Chicago diagnosed it with a hydrogen breath test. 

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I thought about that, but honestly the IBS hasn't been a problem for a few months (even with my current constipation), whereas my Fibro symptoms have taken over. Who knows, maybe it was something else that's cleared up or, more likely, I'm just not eating things that aggravate it. Now, instead of pain in my gut I have pain everywhere else. Yay! (that was actually a big sign that something else was going on. What? I'm in pain and it's not my stomach? This is weird...)

 

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